MY list of things people say about cancer that bug ME
brought down the condemnation from (only a couple) the Positive Thinking School of Blowing Smoke Up...well, people who have partaken of "the pink kool-aid" (attribution to The Accidental Amazon).
Of course it only takes one or two detractors to make me obsess.
Actually, my blog gets very little traffic that isn't directed here by cross posts, (thank you Nancy's Point).
(the links above are to awesome posts by the bloggers named)
I write because it's a therapeutic outlet for ME and possibly validating for women out there who feel as I feel. When I was diagnosed Stage IV, I felt so alone and booted out of the Survivor Club...I searched and searched the internet for info, for others in my situation, and for validation of my feelings. The feelings expressed in my blog profile paragraph are not something I made up last week because I was feeling "bitchy and ungrateful", they are exactly how I felt at the time of my Stave IV diagnosis. Those words actually formed in my head in the hospital after having the "treatable but not curable" conversation with my oncologist.
I finally found some validation from a group of women on a website with a category (I'm not thinking of the right terms...), a section, a bulletin board type thing for women with Advanced (Metastatic) Breast Cancer. I found women who expressed the things I was feeling, who weren't afraid to say how much this sucked, and who weren't afraid to look death in the eye and talk about it.
I had muffins today with a dear friend who is local but whom I met through that website. We were discussing the recent prominence of the fluffy pink crowd, even among the women with metastatic disease. What happened to the voices that used to express what we were feeling?
A woman in Australia, whom I only knew by her screen name of "Flame", was my life-line. Her words validated and strengthened me. She was the first person whose words really touched me and helped me. She called a spade a spade, as they say. She sugar coated nothing.
She died in 2010.
Laura was no-nonsense and realistic.
She died in July of 2010.
Lisa was another who early on was a source of comfort and fortitude to me, who shared my views.
She died in January of 2011.
Barbie was so supportive and accepting of my snark. We would have 'aside' conversations, snarking about something that was said to the group.
She died in 2011 also.
Then there was Mary, who died in October of 2011.
And my dear friend, Kathy, whom I came to love though the internet and had the privilege of flying to visit last December, was willing to talk about death, and what she called her "exit strategy", who was more prepared for what we all face but few deign to accept than anyone else I've met.
Kathy died in July of this year.
So where are the voices we came to love and rely on? So many of those women, from just three years ago, have died. I said to my friend this morning that there were about three of us from that original group of realists who were still here. The influx of the newly diagnosed has beribboned the site. I fear the kool-aid was passed around by the gallon to these women, and they all still had full bladders when drafted to the ranks of MBC.
I say drafted because none of us joined up voluntarily. And I may have mixed some metaphors.
Some of us have migrated away from that site, and wander around Facebook and the blog-o-sphere...
...which was rocked earlier this year by the death of our beloved Rachel, of The Cancer Culture Chronicles, whose tireless research and advocacy lives on in our hearts.
Where was I going with this? Oh yeah; there is turnover in this group. Heartbreaking turnover that makes one hesitant to form new attachments.
And there is a group of voices who are greatly missed, and whose shoes have not been filled by the newly diagnosed.
I am so thankful for Nancy's Point, and The Accidental Amazon, who "get it".
Over muffins this morning, we lamented that while we wanted recognition and dialog, we didn't just want a new color of ribbon. We didn't want a new shade of the same hype and denial.
My muffin friend, K, just lost her hair for the third time. She is in a chemo regimen that leaves her cognitively barely functioning at times. She is raising two young children as a divorced parent, facing down Stage IV cancer as a single woman. She puts herself through the next treatment, and the next, to try to be around for those children as long as she can.She is trying to teach them as much as she can. I'm sure she would be fine with her son calling her a hero. He's a child. She's his mother. But if someone on the fringes of her life who barely knows her, and certainly isn't there to help out when she is feeling like crap, called her 'brave', I think she would rankle.
In the comments on my last post, Ann, of But Doctor, I Hate Pink, wrote, "Brave isn't appropriate. Brave people have a choice and do what they are afraid of anyway - I have no choice."
And Holly G said, "Save it for the truly courageous battlers out there, like our military, the fire fighters and the police."
I've gone nowhere in a big rambling squiggly line with this. I'm sure the three people who regularly read will at least be amused. Those with their heads in the fluffy pink clouds should probably mark this as a blog they no longer need to read. Am I "bitchy and ungrateful"? Well, bitchy sometimes, maybe; hormone manipulation and chemo and 3 years of scanxiety is enough to leave anyone a little prickly. But hell, I wasn't shooting rainbows and unicorns out of my *** before cancer.
Did I steal that from someone? Did someone else say it first? Probably.
Speak up if it was you and I'll attribute the rainbows and unicorns appropriately.
Ungrateful? No, I am not. I am very grateful. I am grateful to my mother, who will go to lunch with me on the days I actually have any money, and who would drive me to a doctor's appointment at the drop of a hat if for some reason I needed to be driven that day. I am grateful for Sujean, who brought dinner over the other night, for no reason at all, other than that she was thinking of me. I am grateful for Stacie, who comes over nearly every week, and chats, or helps me sweep the living room floor, or get the ice out of the bottom of my freezer that has the roast cemented in. I am grateful to my church organization, who makes sure I have groceries in the house, without whom our diet would not have a reliable source of protein. (I didn't say "meat", lest the vegetarians, vegans and cure-your-cancer-with-your-diet people jump all over that one.) I am grateful for David, who though retired and in the early stages of Parkinson's disease, climbed under my kitchen sink on the day before Thanksgiving, and spent hours reattaching the disposal and replacing a faucet. I am grateful to my sister and brother-in-law who helped me with car repairs. I am grateful to my son who does nearly all of the cooking in our house. I am grateful every day for a roof over my head, for food and transportation, and for heath insurance.
But seriously, how interesting would my blog be if I only wrote about that stuff? I personally don't follow any blogs who write through rose-colored
I don't consider myself to be negative. I consider myself realistic.
And if I'm grumpy sometimes, too bad.
If even one person like me, who is searching for support, finds validation in something I write, then, as they say, my work here is done. If another person is offended in some way by my attitude, to them I say, "walk a mile in my shoes".
...which are Birkenstocks, no matter the weather.
My thoughts and feelings are valid because they exist.